Dear Mardel: Welcome, I am a breast cancer survivor Stage 3; so I can
relate closely to what you are going through. First, I have attached sites
to help you obtain the knowledge you need in order to beat cancer and to
play an important roll in your treatment plan. There are many trials going
on now with new treatments out every day. Infact one of our dear members
just sent us a report on Thalidomide; which I have also enclosed for you.
Next you need to put together a team of Doctors, your own, a oncologist and
at least a radiologist. You need to make sure that you understand what they
tell you and that they understand and listen to what you tell them that your
body is telling you. We are blessed that our wonderful bodies tell us
something is wrong and that our bodies know more than doctors. Go to
Medicine On Line ( instructions attached) go to the Archives (directions
included) there you will much technical information. Call NCI
11-800-4-cancer and they will tell you the best doctors and hospitals in
your state; plus allot more information. Now, have you had a mastectomy?
If so and its fairly recent I can give you allot of information on this
also. Please know that too often doctors make estimated predictions as to
how long someone will have to live and yet we see them on this line on a
daily basis outliving all the expectations (thank God, because we love
them). We cannot get hung up with stats dear one as it takes away our hope
and hope is one of the bodies biggest healers. There is but one who knows
when our time is up. My prayers and I hope you stay with us; as I know more
of our wonderful cancering folks will respond to you. Sincerely, Lillian
-----Original Message-----
From: Mardel Klane <mardel.klane@yt.sympatico.ca>
To: mol-cancer@lists.meds.com <mol-cancer@lists.meds.com>
Cc: mardel.klane@yt.sympatico.ca <mardel.klane@yt.sympatico.ca>
Date: Thursday, April 23, 1998 4:35 PM
Subject: [MOL] stage-4
>I have breast cancer stage-4......I would like to now if thier are any
>survive??? and what kind off treatments they have taken, i am takeing
>chemotherapy for the 3 time.it is ever hard to hear that you have the
>big-CC-for the 3time agian, if anyone can help???????? help????????
> thank you
> mardel
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INFORMATION TO HELP YOU
MD Anderson: http//rpisun 2 modacc.tmc.edu.
Better Health: http//www.beter health.com
MOL: http://www.meds./archives/mol.cancer
Mem. Soan-Kettring: http://www.mskcc.org.
NCCS http:.www.access.digex.net
NH Gov. http://www/nci/gov
NH Gov. http:www.nuh.gov.
1-800-4 Cancer (American Cancer Inst.)
(On the Home Page of Medicine On Line (MOL) go to Medline. This is a
service of the National Library of Medicine which provides literature
searches in the medical journals. When you enter the name of the cancer it
will return articiles from the last 3 years. The cancer links contains
patient files. The Medicine On Line Cancer Services are listed there
including some quite good international sites.)
(On the Home Page of Medicine On Line (MOL) go to
Medline. This is a service of the National Library of Medicine which
provides literature searches in the medical journals. When you enter the
name of the cancer it will return articiles from the
last 3 years. The cancer links contains patient files. The Medicine
On Line Cancer Services are listed there including some quite good
international sites.)
I know that a few posts have come across that have asked for info on Thalidomide. I have spent s couple of hours talking to people and have gotten together some basic info and #'s to call. So if interested here goes....
1. There are currently 4 clinical studies that are going on. To find out more, NCI gave me the ph # for Entremed-a company that is working with Bristol Meyers on the studies. The general areas of the clinicals are: breast cancer, metastatic prostate,brain, and the 4th was Karposi's I believe. NCI only had 3 on their list, but got the 4th from Entremed. If you want more info on the specific studies you can call MARY @ 301-738-2490. I know the brain cancer study had a couple specific types they were studying but could not get all the info down quickly enough...sorry for not having specifics on each study. Mary, however, is very nice and can answer questions about the specific studies.
2. Even if you don't fit into the studies you can, with your oncologist's approval, request a "Single Patient" exemption from the FDA to allow use by an individual. You can contact the FDA-Dept of Oncology @ 301-594-2473. They can fax you the 21 pages that includes lots of info on Thalidomide and the form you and your dr. need to fill out. Once you get the form back to the FDA, you get an "IND" number .You can contact Bristol Meyers or one of the other suppliers directly to get the drug. The fax includes names and phone #'s of 3 such suppliers. Page 12 of the fax says that there is NO COST to you/insurance company for Thalidomide. Other costs - i.e. checkups, lab tests, etc. would be charged to insurance. There is a basic description of potential side effects.
Hope this gives a few resources for those who want to check into it further.
Lori & Scott
barry@minn.net
